Chelsey Fix, Associate Director of Industry and Government Relations

NephCure Open Access: Spotlight On Chelsey Fix, Associate Director of Industry and Government Relations

Chelsey Fix started her career with NephCure as a research intern, and this spring she became NephCure’s newest Master of Public Health through her studies at Temple University. She also recently took on a new position at NephCure, working more closely with our industry and government representatives. We are delighted to watch Chelsey’s academic and professional career grow, and we sat down with her recently to learn more about her recent studies and how they will impact her new role at NephCure.

NephCure: You recently finished your master’s degree in public health and epidemiology at Temple. What made you want to study epidemiology?

Chelsey Fix: I really like understanding the relationships between people and diseases. I was inspired to go back for my MPH in general because of my work at NephCure. When I finished undergrad, I had wanted to be a genetic counselor, so when I first started working at NephCure, I thought I would gain some experience and then go back for genetic counseling. I changed my mind because I enjoyed the work in public health with NephCure more than I enjoyed anything else.

NephCure: How has your degree helped you understand the Nephrotic Syndrome community?

Chelsey: I learned a lot about how people make decisions about their health, and that there’s a science to health behaviors. That has helped me a lot in communicating why clinical trials are important. I think I better learned how academics and the people who run clinical trials think, which is helping me bridge the gap between patients, people here at NephCure, and people running the clinical trials. I’m able to sit on both sides.

I want to add the government bridge that comes from my MPH. So much of my education focused on government oversight of health, and that’s really helped me understand how the advocacy world works and also how the FDA works. The government side of this is something that I really didn’t understand until I got an academic education about it.

NephCure: How can a rare disease can be a public health issue?

Chelsey: In school we learned that everything is a public health issue—everything from the bus and transportation, to gun safety, to food choices. That’s all connected to public health. So specifically, NephCure is a public health organization because we’re focused on advancing research to bring new therapies to the market, which could first help a rare disease population and then later, help the greater population in general, with 1 in 7 people affected by Chronic Kidney Disease. Beyond that, we’re an organization that provides education about a disease, which is another root of public health—helping people gain health literacy to understand their disease and the world around them, and how it all impacts their health.

NephCure: What role does the government play in a rare disease?

Chelsey and her master’s fieldwork advisor, Dr. Crystal Gadegbeku.

Chelsey: Another public health mantra is that the fastest way to make a change that will affect the greatest number of people is through policy. The government has the power at Congress to enact policies that can change decision-making around health behaviors. In a simple way, an example of that is the trans-fat ban, which changes behavior for the greatest number of people. In our context, that policy change could be being on the DOD list.

Aside from Congress, the FDA’s role in getting drugs approved is instrumental for any sort of advancement in our policy. NephCure has a close relationship with the FDA as these drugs are coming down the pipeline. We can advocate directly to the FDA on behalf of the patient community and show them the impact of these drugs, so that the FDA is not just seeing it from an academic and numbers perspective but also seeing the people behind it. That’s really public health to me—the FDA seeing both the numbers behind how a drug works, but also seeing the people behind it and the difference that it makes in their lives. And then quantifying that and putting that into a drug decision.

NephCure: If you were going to launch an educational campaign with the government right now for a NephCure-related issue, what would the focus of your campaign be?

Chelsey: I would create a public health campaign around encouraging people to be supportive of clinical trials. Even if you can’t participate, help others participate. Clinical trials aren’t as scary as they might seem. Clinical trials are the future; they’re the only way to get new treatments. Even if you aren’t eligible for a particular trial, help raise awareness, help reduce the stigma around clinical trial participation.

NephCure: What’s your favorite part about working at NephCure?

Chelsey and NephCure Chief Research Officer, Lauren Lee.

Chelsey: Everyone has a different motivation for working towards the same goal. I don’t just mean the staff here, but the researchers and the drug companies and the patients. It’s interesting to see everybody get on the same page for a shared, passionate goal. Everybody is so passionate about it for their own reasons, but the end result will be the same. Ultimately, I like seeing that this shared collaboration is benefitting everybody to get new drugs on the market for our patients.

NephCure: What’s been your favorite NephCure memory or event?

Chelsey: Definitely Advocacy Day, specifically the first Advocacy Day that I ran myself. I was like a crazy person on the Hill. I walked 8 miles that day, according to my phone! I love the way people start the day out really nervous and then by the end they’re these expert advocates who are political insiders. I love seeing the transformation that happens within a day with people’s confidence about how they talk about their disease and how they advocate for themselves. To me, Advocacy Day has two major benefits: We advocate to Congress, and our messages are usually heard because we have a lot of advocacy wins. People also learn in that high-stress situation how to better talk about their disease and advocate for themselves, because you’re talking to these congressional staffers and trying to get their attention, so people learn how to do that through trial by fire.

NephCure: Anything you want to add?

Chelsey: I’ve been here four years, in a lot of different roles, and I’ve had the opportunity to do so many different things at NephCure. This is the most excited for the future that I’ve been in a long time. I think we have a lot of highly visible programs, with the right people paying attention: the FDA, ASN, KHI. Huge players in the field are paying attention and taking us seriously for the first time in our history. In the next year or two, we are going to have made a HUGE impact in the lives of our patients. In a few years, NephCure and Nephrotic Syndrome is going to look completely different from how it does today.

We congratulate Chelsey on her graduate degree and wish her the best of luck in her new role!

Organizational Mission

NephCure Kidney International ® is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure.